Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
It was the summer after 7th grade when I started to feel weakness. At first my parents thought I was just becoming a lazy teenager. I wasnt going out to play with my friends like I use to. I was doing a lot of sitting on the couch and watching TV. It got worse and worse as the weeks went by.
When I finally asked for help I was finding it hard to get up from the chair to go to the bathroom. I remember sitting on the couch and being so thirsty. But it was such a chore to get up that I would wait until I was really thirsty so I could cut down on the trips. I told my mom how hard it was getting to get up and she took me to the doctors. The doctor said it was probably just a flu bug and to keep an eye on me.
A couple of days later I started having trouble focusing. I told my mom and she looked at my eyes. She told me to stop doing that. I didnt know what she was talking about. I went to the mirror and my left eye was completely turned in. I was cockeyed. I got really scared and started to cry. My mom and dad took me to the emergency room. The doctors didnt have a clue what was going on. They just told my mom to take to an eye doctor. He was worthless. Talking about eye patches and wearing glasses. Then I went in for a test where they hooked me up to a bunch of wires to test my nervous system. That doctor told us it might be neurological so we went to see a neurologist. Dr Cella. He asked me a couple of questions and did a couple of strength tests. He showed my mom how he could push my arms down with one finger even though I was trying as hard as I could to keep them up. Then he gave me a shot of something and I felt better. He looked at my mom and told her I have Myasthenia Gravis. We both said, Whats that? in unison. Boy did we find out.
I started taking mestinon 3 times a day. It helped a little. I could start going to school again, but was still pretty sick. I had an MRI at 14 and they said my thymus was slightly enlarged and had to go. I was scheduled for surgery in 3 months.
During that time I started to develop a cough. The doctors said I had to get better before they could operate. They put me on something for pneumonia but the cough just got worse. My doctor wanted an x-ray of my chest to look at my lungs. The x-ray was all cloudy so I got another MRI. I remember he came in the office after looking at the MRI and told me I wasnt going home. It seems that my thymus gland was now the size of a deflated basketball and had to go right away. The tumor was causing my breathing problems.
I went in the next day for the thymectomy. The surgery took 13 hours. I had to have split sternum surgery because my thymus was so big. I was in the ICU for a couple of days and I went home after 10 days total.
As I recovered from the surgery I started feel in better and better. My face stopped drooping and my smile got straight again. My eye, however, was still worthless. I went to an eye doctor. He said that the muscles in my eye were so weak that it would take surgery to correct it. I was now 15. I knew that if I didnt get my eye fixed I would probably never have a girlfriend. Thats a big deal for 15 year old boy who had yet to kiss a girl. I got the surgery and my eye looked better after the swelling went down. I still had double vision though. After a few months the eye got stronger and the double vision went away.
I have been in remission now for almost 25 years. I still get tired and feel week easier than most people, but it nothing like when I was a kid.
Dr. Cella saved my life that day. I havent talked to him in years. I often wonder if he would remember me.
When I finally asked for help I was finding it hard to get up from the chair to go to the bathroom. I remember sitting on the couch and being so thirsty. But it was such a chore to get up that I would wait until I was really thirsty so I could cut down on the trips. I told my mom how hard it was getting to get up and she took me to the doctors. The doctor said it was probably just a flu bug and to keep an eye on me.
A couple of days later I started having trouble focusing. I told my mom and she looked at my eyes. She told me to stop doing that. I didnt know what she was talking about. I went to the mirror and my left eye was completely turned in. I was cockeyed. I got really scared and started to cry. My mom and dad took me to the emergency room. The doctors didnt have a clue what was going on. They just told my mom to take to an eye doctor. He was worthless. Talking about eye patches and wearing glasses. Then I went in for a test where they hooked me up to a bunch of wires to test my nervous system. That doctor told us it might be neurological so we went to see a neurologist. Dr Cella. He asked me a couple of questions and did a couple of strength tests. He showed my mom how he could push my arms down with one finger even though I was trying as hard as I could to keep them up. Then he gave me a shot of something and I felt better. He looked at my mom and told her I have Myasthenia Gravis. We both said, Whats that? in unison. Boy did we find out.
I started taking mestinon 3 times a day. It helped a little. I could start going to school again, but was still pretty sick. I had an MRI at 14 and they said my thymus was slightly enlarged and had to go. I was scheduled for surgery in 3 months.
During that time I started to develop a cough. The doctors said I had to get better before they could operate. They put me on something for pneumonia but the cough just got worse. My doctor wanted an x-ray of my chest to look at my lungs. The x-ray was all cloudy so I got another MRI. I remember he came in the office after looking at the MRI and told me I wasnt going home. It seems that my thymus gland was now the size of a deflated basketball and had to go right away. The tumor was causing my breathing problems.
I went in the next day for the thymectomy. The surgery took 13 hours. I had to have split sternum surgery because my thymus was so big. I was in the ICU for a couple of days and I went home after 10 days total.
As I recovered from the surgery I started feel in better and better. My face stopped drooping and my smile got straight again. My eye, however, was still worthless. I went to an eye doctor. He said that the muscles in my eye were so weak that it would take surgery to correct it. I was now 15. I knew that if I didnt get my eye fixed I would probably never have a girlfriend. Thats a big deal for 15 year old boy who had yet to kiss a girl. I got the surgery and my eye looked better after the swelling went down. I still had double vision though. After a few months the eye got stronger and the double vision went away.
I have been in remission now for almost 25 years. I still get tired and feel week easier than most people, but it nothing like when I was a kid.
Dr. Cella saved my life that day. I havent talked to him in years. I often wonder if he would remember me.
Joe-Fodor
I agree with everyone--what a story! A collection of these would be a great book-. There's so much wisdom on this site. ~joe
lojos66
Thanks for sharing your story---and courage.
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